Observer News: Miss Wheelchair Florida and friends form events group
Miss Wheelchair Florida and friends form events group
================================================================================
Penny_Fletcher on 30/10/2013 19:34:00
By PENNY FLETCHER
It doesn’t matter if you’re 16 or 100, if you have a mental or physical
disability that has prevented you from attending a prom, then A Night of a
Thousand Stars was designed for you.
Organizers were amazed that shortly after the event was announced, room capacity
was filled- with approximately 250 people, including caregivers and volunteers,
set to attend. The numbers showed that a group to put on fun events for the
disabled was sorely needed, said Tina Frerichs.
Because of the troubles she has had finding services and support for her three
now-adult children, Tina, a Sun City Center resident, is starting a Special
Needs Adult Program (SNAP) for adults with disabilities in South Hillsborough
County.
The dance is the first “fun” event she and others involved have planned. It
is being held at Christ Community Church, 1310 John Moore Road, Brandon Nov. 1
beginning at 7:30 p.m., hosted by Miss Wheelchair Florida, Laura-Lee Minutello,
25, of Valrico, her family, Tina, and a host of volunteers.
Laura-Lee’s parents, Marcia and Robert, have lived in Hillsborough County four
years, coming from Bradenton where they lived 20 years after moving to Florida
from New York.
The couple has four daughters, Laura-Lee said. “All of us are adopted. We all
had birth mothers who had addictions, and we all have special needs.”
Laura-Lee is not shy about using words like “special needs” and
“disabled,” although she does not consider herself “unable” to do just
about anything. Her cerebral palsy has not stopped her from attending the
University of Central Florida and she says eventually she wants to obtain her
Masters in Public Policy so she can advocate to raise disability awareness.
“Miss Wheelchair America isn’t a beauty contest,” Laura-Lee said.
“It’s an advocacy competition. National finals were in Rhode Island and were
won by Miss Texas who was severely injured in an automobile accident.
“My platform was ‘Dare to be Different.’ I mean, we all have different eye
color and hair color and skin color. So it’s the same with a person who has a
disability. We’re just different in a different way.”
Tina, Marcia and Robert agreed forming a group is going to be as good for the
caregivers as it is for those who need special care. “Sometimes days go by and
we’re in the house- weeks even- without another soul,” Tina said,
remembering the days she was a single parent (before she remarried) and had
three children in wheelchairs.
Marcia added that once disabled children leave school, they “age out” of all
the services provided by ESE programs (Exceptional Student Education). “It’s
hard after that, because there’s really not much out there.”
Laura-Lee’s new position as Miss Wheelchair Florida enabled her to talk
one-on-one with Florida Gov. Rick Scott and she also regularly goes to local
schools and senior centers, talking with people of all ages about what they’d
like to see happen and different ways they might be able to make their dreams
realities.
“I want to help empower people to know they can do more than they think they
can do,” Laura-Lee said.
Marcia said her daughter has tried Zumba, ridden on the back of a motorcycle,
been parasailing, and trains in boxing with her own pair of pink gloves.
“So you do things a little differently from most people,” Laura-Lee said.
“But you can still enjoy them.”
The November dance will be the first where all the people who have signed up
will meet each other, Tina said. It is a very exciting time for her because she
has two children that are critically ill and one who is chronically ill. She
explains the difference in the care they must receive.
“My 31-year-old daughter Nicole Marie is mentally about six and has Lennox
Gautaut syndrome. That’s where she has from 100 to 200 seizures a day,” she
said. In addition, she has cerebral palsy and a condition where her central
nervous system forgets to tell her body to breathe while she sleeps. She also
has a feeding tube.
“I was a full time restaurant manager, and then, as a single parent, all at
once I was a caregiver,” she said. Her second child is now 29 and is a nurse
in N.J. but manages a chronic illness, and her third, Michael Scott, who is now
28, has what people usually recognize best as “the boy in the bubble
disease.”
“It’s a type of anemia where he has lost his immune system. And at six, he
developed juvenile arthritis too. At that time, I had three children in
wheelchairs,” she said.
Michael Scott still receives transfusions every week to help fight infections.
“I was living in N.J. and my parents were in Florida, both sick, and I was
flying back and forth,” Tina said. After moving to Florida, she remarried. Her
husband, Ralph, has Lupus but lives an active life and is a manager for
Walgreens in Bradenton.
“He has been a great source of strength and support,” she said. But when she
moved to Florida, she was still a single parent.
“I had my mom dying in one room and my daughter on life support in another
room and she (her daughter) was No. 14,364 for a Medicaid waiver for in-home
services,” she said. “We had nothing (no support services).”
Once she began to check the Internet for services, Tina met other parents like
herself and realized it wasn’t just services they needed but interaction with
others — and yes, just plain fun.
“My daughter has never been to a prom,” she said with tears in her eyes.
“But Night of a Thousand Stars will change that.”
The dance will be the first event scheduled to create memories for some who have
never known anything but their own families, caregivers, and medical staff.
A few doctors and EMTs have volunteered their services to be in attendance in
case they are needed.
“There’s one man who’s coming who is on a heart transplant list, and an
elderly couple who are both disabled,” said Marcia. “We’re going to see a
lot of different things.”
The organizers are very pleased at the help given by some businesses and
volunteers to make the event possible.
“We were able to collect more than 100 gowns to offer the girls. Thirty-two or
33 of them got to try on gowns and they got shoes and jewelry and everything.”
Memory Maker (store) in Bradenton and some individuals gave the gowns, and Lori
Flaws — a friend of Marcia’s — is making 300 cupcakes. “You can’t do
that all at once, so they have to be made in batches and then frozen, but she is
making every one herself.”
Marcia and Tina are especially grateful to Trident Program (Bradenton) for
giving them a place to try on the gowns, and to The Noise Box, a musical group
at the Brandon church that put on a concert in October that raised $550 to put
on the dance.
Although the list for the dance has already filled because of fire regulations
on numbers of people allowed in buildings (according to the building’s size)
others are encouraged to contact the group and find out about future events. A
data base is being made for services and support groups, and there will be
get-togethers of many kinds for both caregivers and persons who have special
needs of all kinds.
“It is a very exciting time,” Tina said.
To find out more, call Tina at 813-662-7555 or email her at rafitina@aol.com.